Researchers study reimbursing living organ donors for out-of-pocket expenses

Last year nearly 7,000 people donated a kidney, segment of the liver or lobe of a lung to help someone in need of a transplant. In fact at some major transplant centers — like Barnes-Jewish Hospital and St. Louis Children's Hospital at Washington University Medical Center — the number of transplants involving living organ donors now exceeds the number of transplants using organs from deceased donors.

In an effort to close the gap between organ supply and demand, researchers at Washington University School of Medicine, the University of Michigan and the American Society of Transplant Surgeons are studying ways to reimburse living donors for some of their out-of-pocket expenses when they choose to donate an organ.

“One of the barriers to living organ donation is the financial barrier,” says Barry A. Hong, Ph.D., professor of psychiatry at Washington University and one of the study's principal investigators. “When a relative or friend agrees to donate, they might need an airline ticket or have to pay for lodging or medical tests. Much of that is not covered by insurance, so when someone volunteers to be a donor, they may have significant out-of-pocket expenses.”

The current study, funded by an $8 million grant from the Health Resources and Services Administration, will identify and reimburse potential living donors who face financial hardship from those expenses. The investigators hope both to determine whether a system of reimbursement is desirable and by covering some of those out-of-pocket costs to make between 300 and 400 organs available for transplantation that would not have been in the pool otherwise.

“Paying people to donate remains illegal, and that's not what we're doing here,” Hong says. “This is a social justice issue. If people come from higher income brackets, they can more easily afford the expenses associated with donation. We hope to ensure that financial issues don't prevent living donors from giving patients in need access to life-saving organs.”

In a related study, Hong and his co-investigators — Roger D. Yusen, M.D., assistant professor of medicine and Alec Patterson, M.D., the Evarts Graham Professor of Surgery and chief of the Division of Cardiothoracic Surgery — also are taking a close look at the health of living organ donors in the months and years following a transplant. Studying living lung and kidney donors, the researchers want to ensure that those donors aren't experiencing any serious, long-term problems. This is the first large-scale, government-sponsored study to look at organ donor health following transplantation.

“In some sense, transplant centers have never really thought of living donors as our patients,” Hong says. “When you don't think of them as patients, you don't follow up with them. Some donors might be followed for a month or six months or even a year, but after that, we really don't know much about them. We just don't know whether being generous and donating an organ might have conferred some extra burden on these people.”

When a person donates a kidney, for instance, what happens if later in life they develop kidney disease themselves? And do living donors change their risk of health problems in the years after the transplant? No one really knows. But Hong hopes that learning the answer might provide more incentive for potential living donors.

“The government and the transplant community want to find every reasonable way to put more organs into the pool,” he says. “One way might involve removing economic disincentives for living donors. Another way might be giving people better long-term information about donor outcomes. If we can assure donors that they won't have to spend thousands of dollars and that they won't increase their risk of problems down the road, more people might want to donate. That could make more organs available for the people currently waiting for a life-saving transplant.”